By Thembelihle Ngcai
I’m the only disabled person in my family. I was one of the very few visibly disabled people at high school, university, and later in the workplace.
My experience of disability has always been characterised by comparison. How I was disciplined at home, what I could participate in at school, my longevity in employment and now, romantic relationships, neatly on the opposite column, always desperately gauging against the how, when, what and why of my non-disabled counterparts to make sure I wasn’t being cheated out of the life everyone else had.
“What would you say is the reason you have never been in a long-term relationship?” Quickly, I minimise my WhatsApp to go to my Notes App where a thought-provoking text essay about the impact of desirability politics on black, fat, disabled women finding partners waits to be used for what is going to be yet another failed talking stage
I am 26 years old, and as the popular trope says, I don’t have exes. Only, in my case, it is not a trope. While I’ve been able to go toe to toe with my non-disabled peers since I was a child; there is a footnote to my story. It is a footnote that ever so gently, but acutely reminds me that I am disabled.
On first dates when I didn’t call the restaurant in advance to let them know I’m in a wheelchair and patrons must now silently, pitifully be asked to move to the non-wheelchair tables, it reminds me.
At the first pinnacle of my success in the past year, I had nothing to long for, at least not to those around me. But there was something I yearned for and had desired for a very long time.
I wanted a boyfriend. A real relationship. Much like the one my friends had.
I’d paid my dues and done the self-work, and passed all the rigorous Am I Ready? tests, self-loved myself to oblivion and even received the green light from my psychiatrist. So why was I not graduating past the talking stage?
My non-disabled friends, single by their own volition or who have been in back-to-back long-term relationships for as long as I can remember or who had joined the growing chorus that preached the gospel of wayekeni (leave men alone), couldn’t possibly relate.
They’d never had to contemplate cropping the wheelchair out of their Tinder photos in order for their disability not to detract from how sexy they wanted to be viewed.
They hadn’t hypersexualised, or even fetishised themselves online to allay any fears men had that disabled women couldn’t be sexual in the way other women were.
No, my non-disabled friends hadn’t after disingenuously hiding the disability, spent weeks typing and untyping, calculating the best day and time, deciding on tone, all in which to finally, bravely just admit that I haven’t figured out how to articulate that I’m just scared to present myself to someone who’ll find me lacking because, secretly, I think there should be more to me, too.
My grandmother sat on my bed one morning after a regular night out to ask how we young people do it. My mom complained about being the chauffeur for my escapades, but what I’ll always recall is my grandmother reminding my mother that I am disabled and if their only role is to endure great discomfort so that I can do everything my peers do, then so be it.
Perhaps it is this well-intended paradox that because I am disabled, I must insist on normalcy at whatever cost, that has become my undoing as an adult.
My mom is the designated orientator. She exchanges pleasantries with my date and ritually begins the crash course.
First, how to get me inside the car, making sure he listens to my directions on when to turn when we stand together. This is foreign to him, but he meets it with enthusiasm and diligence in equal measure.
It’s the last time she’ll probably ever see him. After tonight, I’ll eventually grow tired of willing him to see me as more than just his cool girl friend, like I did the last five times I went on a date, just like this one.
Too often, the burden in finding a partner for disabled people means morphing themselves or chiselling parts of their disability to fit elusive constructs not designed for them.
* Ngcai was born with spinal muscular atrophy Type 3 - a rare hereditary degenerative neuromuscular disease. She is the deputy director of administration in the Eastern Cape premier’s office